Stage 4 and running out of options

I was diagnosed with stage 4 in May 12 via a lap. Since the. I had a merina could fitted in July 12 but this was removed in April 13 as it had slipped. The same day I had a new one inserted, only to get an infection and it had to be removed 4 days later. I then had another fitted 1st July. I then ended up in A&E on Saturday with crippling pains. I was admitted to a ward and on Sunday saw my consultant who made the decision to remove the coil. I have been pleading with the registrars ever since to do another lap to try and clear some of the endo away, but they refused as it was not an emergency!

I finally saw my consultant again yesterday and requested the same, but he told me my insides are such a mess that another lap would not achieve anything. He says I will need a MRI (I am currently too big to fit in the scanner, I am going to try and loose weight) as the endo has fused my womb to my bowel solid. This will enable him to see what needs to be done on the bowel along with a hysterectomy. He advised it is a massive massive op and really doesn't want to do it.

So they have released me from hospital still in pain and he has put me on Provera 20mg tablets (these are not going to help my weight) and wants to try and treat it this way rather than the surgical route.

I am at my wits end crying all the time. As I am stuck in a cycle, need pain killers for the pain they (sorry tmi) bung me up and as the endo is stuck to my bowel, being bunged up causes it to flare up even more. I am taking fybogel and laxido but they are not helping.

Has anyone else been in this situation? Did you press for the surgery? Has it improved?

Sorry I don't post on here very often but really would appreciate your experiences as I don't really know where to turn.

Thanking you all in advance x

6 Replies

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  • Hi I have had 4 laparoscopys and endometriosis burnt away 2ce but it has made no difference what so ever 4 years later and 2 babies later it is worse then ever I am pushing to have a hysterectomy to finally rid the pain but they won't do that till I have the hormone therapy ( brings on artifical menopause) this also shrinks the endometriosis and helps when they finally do the hysterectomy. Have you asked to try this first?

    Lisa

  • Thank you for your response.

    My consultant did mention giving me something to effectively switch off my ovaries but said this will only be done 6 months prior to having the hysterectomy, but really doesn't seem keen to go down the surgery route.

    I will be seeing him again shortly and I think I will push for a hysterectomy.

    I am starting a diet so that I can have the MRI and prove to him that I am serious about doing something more than keep taking tablets day in day out.

  • I have stage 4, diagnosed with frozen pelvis after a private op, everything stuck together. Had NHS appointment and they recommended hysterectomy, was called back a month or so later to say they'd seen the results of the private op and I was an extremely high risk for bowel injury during op due to level of infiltration of the endo. The risk meant I could end up with a colostomy bag for 6 months or permanently. I am currently taking norethisterone which has stopped all bleeding and pain. one downside is that I am putting on quite a bit of weight. I am determined to do something about that and wanted to wish you luck with your diet and finding a solution that works best for you x

  • Thank you so much for your reply. I am sorry to hear you have a very difficult decision to make.

    I too was on norethisterone, I like you started to gain weight with it.

    It's like a catch 22 situation, you need the meds to try and control it but the side effects cause other issues which don't help the whole situation.

    I wish you luck with choosing the right option for you. xx

  • I was diagnosed stage 4 in march, pretty much same as you frozen pelvis etc as they say, I've been advised to have a hysterectomy but I am so scared of the risk to the bowel when trying to remove the endo from it that I am trying different ways to manage it and maybe postpone the hysterectomy.

    Also, who has told you that you are too big for the MRI scanner? I had an MRI march last year, and I was really scared I would get stuck as I was so big, I have since lost 5 1/2 stone, still have a lot to lose but if you want any more details you can private message me if you want xx

  • Congratulations on your weight loss that is amazing.

    Thank you for taking the time to reply and share your story.

    I have had to endure an MRI before as I had to have several operations on my shoulders. I went for a normal one and as they tried to put me in my arms and everything were touching the sides and squashing me. So I panicked and they pulled me out. I went for an open MRI and I just fitted in but I was only in as far as my shoulders there is no way I would have been able to get all the way in.

    I have been dieting since Monday (I get very scale happy when I am on a diet, on them every 2 days! Lol) and have so far lost 6lb. So far so good. I know for me I will need to lose about 6st so that the MRI is manageable and the another 2-3st on top of that to ensure I am at a "normal" weight.

    I know for me that I cannot have anything with caffeine in it or alcohol (my life is over!) as these flare the endo up.

    I am taking the provera and so far they are seeming to be working and I am now only taking ibuprofen twice a day.

    Wishing you well and thanking you again, let me know if there is a way that you find helps you, you never know it may work for me xx

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